Looking like a change in mood..........oooohh

Discussion in 'General Parenting' started by lizzie09, Nov 15, 2008.

  1. lizzie09

    lizzie09 lizzie

    Please can you all send positive thoughts my way?
    My son has PWS and I see a change in his mood since Thursday,
    He has never had medications prescribed except the odd Xanax.
    Its just that no one would prescribe for him and I now feel as if I am going down a steep hill and cannot stop whats happening,,,,please please I hope I am wrong.
  2. KTMom91

    KTMom91 Well-Known Member

    Lizzie, so sorry things aren't going well. Sending hugs and prayers that your son is able to get some help before something happens to him.
  3. susiestar

    susiestar Roll With It

    Sending positive thoughts, prayers, good juju and rattling beads that this does not turn out to be a downhill run.
  4. Jena

    Jena New Member

    Sending you good thoughts and sending hugs and prayers
  5. lizzie09

    lizzie09 lizzie

    All your thoughts and prayers are SO appreciated!

    Today seems better, He seems better focussed again.
    There was a disagreement between himself and another boy in the centre
    which seemed to start things up. Just a silly matter that only the difficult children woould get excited about.
    I gave him Xanax and althoough I saw no great change last night, today has started better or more stable maybe
    I wouldnt be so concerned if I had a proper diagnosis of what type of mood disorder this could be and appropriate medications were on the cards.
    However whilst I know Risperidol is useful in PWS cases I am also terrified of the weight consequences that it could have so I am a bit caught both ways.

    At least I see forward to tomorrow at the moment and that he will attend his centre most likely.

    This poor boy is so good generally but it is like looking at an alien when this happens and I could so identify with the other posts like this during the week.

    Not out of this wood yet but maybe a bit better than expected at the moment

    Hugs to you all xx
  6. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    What country do you live in? It may help to talk to somebody here who understands how your mental health system works. It sounds like he does need medication...good luck
  7. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member


    I hope you are right about the upswing. Fingers crossed and positive vibes being sent his way.

  8. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Glad you saw a positive change today, sending prayers this continues. Hugs.
  9. lizzie09

    lizzie09 lizzie

    Hello MidwestMom

    I am from Ireland. My son has Prader Willi syndrome and there is no multidisclipinary team that will treat this condition especially at adult level.

    I have posted before about the difficulties we have on a yearly basis for 3mths.
    I have not yet managed to get anyone on board that will medicate for mood symptoms despite the devastation they cause to all of us.
    He doesnt seem to require regular medication but something should be available for these episodes.

    Perhaps we are learning how to manage the anxiety element better before bigger issues happen....I just dont know yet.
  10. TerryJ2

    TerryJ2 Well-Known Member

    Hi Lizzie, I could hear the panic in your voice, and am glad that as I read through all the notes, he improved a bit. You're right, it is so hard to get mood diagnosis and treatment when he has PWS, which can affect emotions. Still, it seems that you could treat it with-some of the same medications used for mainstream mood disorders. Sigh.
    Isn't he old enough to advocate for himself a bit? Tell the dr that he would like to take something? Just wondering.
  11. lizzie09

    lizzie09 lizzie

    Thank you Terry,12 Yes there was positive panic in my voice alright We can all underdtand that so well.

    He is improved and it has not escalated (yet anyway) Im just using the Xanax as required but only now and then.

    It is because of the syndrome and its odd characteristics that help is difficult to find.

    He asked for help last year as he felt I had not done enough LOL. and rang the ambulance service but they could do nothing. He can explain so well that he feels muddled.

    It seems psychiatric units do not cater for handicap here but they dont admit that so yoiu are reelilng from place to place till eventually the symptoms pass ( after 12/14 weeks!_
    I do feel the kind thought have helped me so much x
  12. lizzie09

    lizzie09 lizzie

    Unfortunately I was right...the change has happened.
    We were motoring nicely...a bit odd but ok. No calls from day centre and I was still giving occasional Xanax.
    On Thursday he seemed more hyper. I emailed the psychotherapist who answered with the news that the centre had alerted him that day to changes in my son. Strangely I got no phone call. That could be perceived as a kind act,
    On Friday I drove my son to the centre and spoke with staff.
    Yes they were aware of pending difficulties. I made an AP to see the psychiatric/doctor there on Thurs next. Staff were very supportive.

    I have since learned from my son that a Downs Syndrome client he had become friendly with had asked him to engage in some sexual activity..shock /horror! He has olny told me that he was asked to kiss this lad and he would get money...I dont mean ONLY.. merely thats all info I got. My son told the staff and the psychotherapist over the last few days apparrantly. He did not tell me then.

    The centre had told me they thought a sex education class would be good for my son but they did not refer to this incident or any other and they did know as my son got quite emotional there on Thursday last. As I was not aware of anything then I did not query anything.....what is happening? Was this a trigger?
    I really do not know

    I do know I have been up all night as he rustled around his room and came in and out. I am very mixed up as I write so excuse if there is not a lot of sense here at moment, its only as I know it. I am so tired.

    I suppose He may now be prescribed a mood stabilizer like Risperidone
    but I will find waiting till Thursday next difficulat to say the least.

    Hes messing with everything and in and out of the other boys rooms causing mayhem